A new national initiative aims to identify where palliative care services are available and where patients continue to face gaps in access.
The Center to Advance Palliative Care (CAPC) has launched the Palliative Care Program Inventory, a national effort to collect information about specialty palliative care programs operating in hospitals and community settings. According to CAPC, the initiative will provide a clearer picture of the nation’s palliative care infrastructure and help identify underserved communities.
People living with serious illnesses across the United States may face challenges finding specialty palliative care, particularly in community settings such as their homes, clinics and long-term care facilities, according to Brynn Bowman, CEO of CAPC.
“We have had a gap in data collection in the field for a couple of years, and the most important piece of information that we want to be able to answer for the advocates and champions out there is where is palliative care accessible to patients and where are there gaps in access,” Bowman told Palliative Care News. “That information will be really useful for state advocates who are advancing palliative care initiatives in their states and need to understand again where there’s coverage and where there isn’t.”
The inventory will gather information directly from programs nationwide, including staffing levels, patient volumes and models of care delivery, Rachael Heitner, CAPC’s director of Research and Insights, said. CAPC, palliative care providers and advocates can use the information to support research, policy development and advocacy efforts aimed at expanding access to palliative care.
While information about hospital-based palliative care is more developed, significant data gaps remain in community-based services, Bowman said. These programs may be operated by health systems, hospices, home health agencies and medical groups, making it difficult to develop a complete national picture of access.
The inventory is also intended help programs evaluate their staffing and resources by comparing their operations with similar programs, Heitner said. This information could help organizations demonstrate the need for additional funding and staff.
“Any programs that participate in the Palliative Care Program Inventory have the option to be listed in [CAPC’s] provider directory. For some, that might be an incentive to participate, so they can widen their patient base,” Heitner told Palliative Care News. “Palliative care programs who may want to grow may want to ask for additional resources for their program find it beneficial to see how other programs are doing.”
The provider directory is designed to help patients, families, healthcare professionals and referral partners locate available services in their communities.
The inventory is collecting operational information for calendar year 2025. Participation is free and open to all specialty palliative care programs in the United States. The initiative does not collect patient-level information or protected health information, and publicly released findings will be presented in aggregate form.
CAPC plans to use the information to produce national reports and provide resources and technical assistance to palliative care programs. The organization also hopes to update the inventory annually to maintain an accurate picture of services and access gaps.
The initiative is supported by the McElhattan Foundation and The John A. Hartford Foundation.
“This will be a living, breathing data collection platform that is going to stick around, and we’re going to try to renew these data every year so that we make sure that this is a complete and accurate picture of access to specialty palliative care,” Bowman said. “The program inventory is really the one place where all of those provider types can submit their data so that we have a comprehensive picture of where palliative care is available in the community.”
